Sunday, May 19, 2019

If you are a regular reader of this posting, you know I regularly play devil's advocate here. Today I'm questioning why I survived my strokes. I'm delving into why did I survive my strokes when it would have been much easier to have died. As of today, I've survived six strokes. Am I just lucky, or unlucky, or what?

I honestly haven't got an answer other than I haven't fulfilled God's purpose for me on this earth yet. I play the devil's advocate game to help me understand and see the whole picture. Others make lists of pros and cons.I have been luckier than most. The multiple strokes have hit in redundant functioning areas of my brain and just reset set my recovery. Meaning a new stroke attacks a part of my brain that has a backup already in place, or I am just recovering functions over and over again that I'd recovered. I'm in a constant battle in relearning and rerouting/reawakening neural pathways. Yes, this is very frustrating! At times it's so frustrating I pray for death. I'm tiring of the relearning process.There. I've said it, but I'm still here so I keep fighting.
First, baclofen pump update. Now, I'm four weeks into a fully functioning pump. I noticed a weakening on my functioning side. I'm constantly listing to the left side (functioning) and having to correct my posture. I'm not able to lift as much weight with my functioning arm. I'm having difficulty rising from a prone or seated position. This may be because I had gotten used to functioning against the spasticity, or maybe the oral baclofen I'm still taking at maximum dose is too much, or it could be that the cervical placement is just affecting both sides equally. The last was a side effect of the pump discussed in my preop as possible side effects.

I quick called to my baclofen pump doctor have them reduce my oral baclofen by 20 mg to see if it helps. After a week, most has subsided with the decrease. So, I've got an appointment to raise my pump dose to get me off the oral baclofen. Conversely, or on the positive side, I can now manually move my wrist 10 degrees. The elbow flexion is still being stubborn. My constant pain levels have dropped to a 0-2!

Sunday before last, I published my frustration at showing so little progress I've had after my baclofen pump surgery. In that post I mentioned the pros and cons in being three weeks post op
and two weeks having the standard, initial dose of baclofen.That prompted a response from Rebecca Dutton, a fellow strokee. I've been in awe and full of respect of this writer for almost seven years since my first stroke. She was the first stroke blogger I read and conversed with regularly. Her expertise as an OT aside, she'd survived two brain stem strokes.

As an OT I had no idea how much problem solving a stroke requires until the day we die.

In response, I wrote back...

As most stroke survivors, I almost wished my strokes had kill me. As
someone who watched her grandmother fight her way through six strokes take
away bits and pieces by reoccurring strokes until a massive 7th stroke
finally took her home,I'm well aware of the ongoing fight. It must be
where I get my fighting spirit comes from. I still fighting after my 6th
and trying to live each day the best I can.

I often quote Nietzsche, "That which doesn't kill us makes us stronger." Or my prayer before surgery or after any perceived life changing event, "Lord if I don't awaken from this, I'll happily be with You. If I awaken, I'll know my job on this earth isn't finished yet." My life functions on faith.

Still as Rebecca says, any recovery is a constant battle. You would think that once the brain reroutes neurons to make a movement possible that after some repetitions it becomes recovered, but that's not the case. This is why stroke recovery is so frustrating.

When you break a bone, it heals and you go on with your life. This is not the case with the brain. It's a life long fight to hold onto recovery. You fight holding onto that recovery until you draw your last breath. You will battle every day between being able to do and not being able to do. But you fight everyday for something, don't you? That's called living, right? Everyone has their burdens to bear and this is ours.

Geez Jo, you are being a real bummer today, ain't ya? Yes and no, I'm just telling y'all what it's like living post stroke. But it's not all bad. Every morning you awaken to new possibilities. Bumble bees buzzing around you doing their daily tasks. Birds fly and sometimes settle near singing their songs. Flowers give you their fragrances and blooms for your enjoyment. Life goes on. So when questioning your survival after your stroke, look a closer look around you. What a gift you've been given for just a new day. So I'm not wishing for death today. Today, I'm living life to the ultimate.

Sunday, May 12, 2019

I've recently received several comments, requests, and guest posting requests. In actuality, it's several requests a month over the lasts several years. As an author, I'm flattered. As a stroke survivor, I'm honored by the requests.

As a previously hybrid published author, I know what sells well and what doesn't. Another self published memoir of a stroke survivor just doesn't have the market niche that equals sales. It's a vanity press offering at best. What made my my proposal for Don't Get Your Panties in a Wad go to a bidding war between publishers with only the first draft of 30K words was it was a niche nobody had hit on before. It was a humorous point of view. Unfortunately, a third stroke left the book unfinished and nonpunishable.

While I write and syndicate a stroke survivor's blog/article each week, it's not the same as writing a book. Writing a book takes planning, outlining, and organizing. None of which I do well anymore. My blogs/articles can now take several weeks in the writing and editing stages before they are published. The confidence born of over 30+ years in publishing is gone. Words that magically popped into my brain in an instant may now take several hours or days to materialize.

So why struggle with doing it at all? It's important to me and others. It helps caregivers to understand their loved ones who may not be able to voice their thoughts. It helps other stroke survivors feel they are not alone. It may allow other stroke survivors to even look at their life in a positive light. The hundreds of emails I get each month can't all be crazy or trying to promote something. On average they are split 50/50 between stroke survivors/caregivers and medical/health care providers. While comments on various blogs may be in single digits, the emails and hits on any blog/article may reach into the hundreds or thousands. That speaks volumes to me and urges me to continue.

NOT!

I do write guest posts and do some personal appearances. I don't always mention them here. I am no way an "expert" although I accept the title of "advocate." I firmly believe everyone should be self advocating. Yes, I'm Dr Murphey with a PhD in theology, but prefer being called Pastor Jo. I have a lot of real life experiences that allows me to speak on a wide range of subjects but an "expert" that's stretching if in the broadest sense of the word. I do require two weeks notice on guest posts and at least two months notice on guest appearances.

I've always said that I could wallpaper a room with all of mine. I recently threw out a box of mine and my husband's. That's how much stock I held in all the Associates, Bachelor's, Master's and

PhDs we held. It just added to papers we held onto to prove our man made gauges of how smart we were and the ability to add letters after our names to make it official. Who really cares about an a BSN and all the sub specialization letters after my name if I save your life? Isn't saving your life enough? It only matters to relicensing boards, and if I'm looking for a job even though graduation for some is dated in the 1970s if I still maintained my licenses for a fee. Computer programming langues I learned in the 1980s only were useful until Y2K. Made a killing with that (Grin). Now that information is obsolete. Accounting I learned in the 80s has been replaced with software that even a monkey can do. Still, once upon a time each of of them had value, but not so much anymore even with publishing anything. Everything is but what have you done lately?

So now I write about what I do everyday living post stroke and homesteading. Yes, I could do it for money, but unless I can clear five figures a year doing it, it doesn't pay for me to write for profit. Once upon a time it was possible, even upwards of 6 or 7 figures, but now I'm living post stroke. I realize my limitations for now. But..

Sunday, May 5, 2019

Well, it's been three weeks since the baclofen pump was placed, but only two weeks since the pump was filled with the baclofen. The results on a whole was results thus far has been lackluster except for pain relief. I'm still on my oral baclofen while the 25CC of the saline works it's way out of my spinal fluid. I was forewarned about this. But I'm still chomping at the bit wanting to get on with it.

I have noticed that the rigidity in my elbow is less. I keep having to work at holding my bunny greens basket from sliding off my arm. This was the same arm that could carry 5-7 splits of firewood a couple of months ago without budging. So that's progress.

Another issue I had was with the elasticized binder placed around my midsection after surgery from bra line to mid hips. While it's not uncomfortable it does shift and bunch up as I move around. The added support is quite comforting while I'm moving if it didn't shift so much. The neurosurgeon's assistant did say I could take it off when sedentary. There is a major malfunction with this. While affixing the velcro with two hands is easy. But I only have ONE functioning hand. So I lay on my back tugging at the edges until it's halfway unbunched but I can't fasten it. Of course, I could always ask Mel to help, but the timing is always off when it's at it's worse.

Yes, I'm just in a griping mood, can't you tell?

I was told I could drive again. Considering I drove myself to three Atlanta doctor appointments not withstanding. (Grin) I wasn't on narcotics. I'd only taken 3 of the prescription of 12 morphine tablets, and had reduced my Valium intake from 4 to 1 a day, I thought I was safe enough to drive. Coughing, sneezing, and a good old belly laugh are PAINFUL. Off times they are without warning so I can't brace for it. Other than extreme fatigue from big city driving. No other ill effects. I got home and took a nap, but I did. The neurologist's assistant gave me permission to drive. Doh! When I explained that it was planting season and we had 1/4 acre to plant, she grudgingly gave me permission to bend and lift ten pounds within reason. If I experienced pain, I was to stop and rest. You gotta love doctors that work with you.

I have to admit that I over did last Saturday and paid for it with extra pain. I did take an extra valium at bedtime to compensate for it. Ever since my drug addiction problem 30+ years ago, I'm strongly against any habit forming drugs. I have to be really bad pain before I take any form of these drugs. Drug withdrawal aside, it's just an aversion to all things habit forming.

An exciting bit of news, I saw Dr Daly, the orthopedist. His plans for releasing the contractures to allow movement to the wrist and fingers is awesome! Of course, I'll need a higher dose of baclofen via the pump first. He was surprised at the lack of contractures in the elbow. He had high praise for my PT and their dry needling therapies. His hopes for recovery of strokes and spasticity was contagious.

After almost two years of going through the motions, I've finally hit the right combination of doctors. While I absolutely loved my previous rehab team, I'm hoping this new team will be just as fabulous.

Hope and possibilities abound once again. Stealing back increments of success from spasticity is worth it. Recovery is worth it. Being on the forefront of new and innovated treatments for survivors living post can, with positive results, give another option to survivors world wide.

Sunday, April 28, 2019

The baclofen pump surgery was no picnic. It will take time to fully recover and I know this. The fact that I'm living post stroke, have a bad heart, and numerous health issues further complicates healing. I'm not to bend, twist, nor lift greater than 5 lbs for at least five more weeks. I finally got the baclofen pump filled and it's working.

While abdominal implanted device is healing, the post abdominal surgical pain continues to nag me. But the good news is the spasticity pain is a very manageable 2 or 3 out of 10. Mobility of previously locked tight spasticity is lessened allowing for more easier movement. I'm hopeful that with future tweaks with the dosage that this will get better with time and therapy.

I just completed my biannual health check ups with both my PC and my cardiologists. While my PC wants to try new allergy drugs on me to see if we can get more relief for me, he doesn't want to throw a monkey wrench in the whole baclofen study. My cardiologist, on the other hand after reviewing my hospitalization reports, has changed my blood pressure and v-fib meds to PRN (as needed). This is a honeymoon period my body gives me to adjust. After my first stroke, this honeymoon lasted six months. I'm happy to report that I'm back on blood thinners again. No more playing Russian roulette with another stroke.

I have my first appointment with Emory's orthopedics on the 2nd. So the trial study begins. I really hope this orthopedist is better than the jerk I dealt with last time. Sure, this time I'm a five month nonsmoker. It's also a case of them wanting me instead of me wanting them. It gives me a certain amount of leverage. With specialists this is always the best position to be in. At least in my point of view.

So the excitement of the possibilities are still rising. I have a future to look forward to. May my improvement strides make it easier for other stroke survivors' lot easier. At the very least, give them options and hope. I'll gladly be the guinea pig. It can't hurt me either.

Sunday, April 21, 2019

I wasn't a hoarder as a prepper before my stroke. I never bought more than a year's worth of anything, except for paper goods but that came in handy post stroke. I could make my own laundry, bath, and dishwasher soap if I needed to in a pinch. In fact, I still do many of the things I wrote about in my book living post stroke. I actually challenged myself after my stroke to find ways that I could still function with adaptation.

So today, I'm living on a homestead eeking my way towards being self sufficient. Mentally and physically, I'm a lot better off for it. That brings me today's topic, why I still keep a prepper's pantry.

I watched a YouTube video of a large family mom creating a month's worth of freezer meals. She ended up creating 42 freezer meals in about sixteen hours. It was fascinating to watch. Watch for yourself here. All the time I was watching her I kept a watch on how much trash she generated, and how much time and money she wasted. With a garden and precanning ingredients, she could have saved hours of cooking. Granted, she just went shopping and picked what needed while I spent almost six months growing, processing, and prepping my ingredients, but to each their own.

I also make most pastas except for formed shells and macaroni. Grind my own flour. Make my own sausage and butcher carcasses of meat down to the minutest form. But again that me being self reliant, and knowing where my meat comes from. For this endeavor, I went "shopping" in my food store pantry. I used my handy dandy shopping cart to help me carry in all that I needed.

To prove my point and down sizing the recipes for two servings versus twelve, I replicated her menus sort of. I added quite a few whole meat meals and seafood dishes. In Operation Empty the Freezer last summer, found me canning meats, spaghetti sauces, ground beef and turkey. I'll make about 2 cases (24 pints)of chicken, beef, turkey, lamb, vegetable, and pork broth on hand. They are the by products of eating real, whole foods and butchering your own homesteading efforts.

The difference in what was produced... I made my own ricotta and mozzarella cheeses, sour cream, and yogurt from locally sourced pasture fed cow's for milk. All the beef, lamb, and pork which we didn't raise were antibiotic and chemical free. 80% of the seasonings and blends used were done by me. Total time to put it all together was 5 hours after raiding my prepper's pantry. Of course, that doesn't include time and labor to procure and process it all.

I also included desserts (4 total-cheesecake, peanut butter and chocolate chip cookies, peach and apple turnovers) and breakfast menus (waffles with sausage, pancakes with bacon, crumpets, and french toast) to my freezer which added another 2 hours. Plus, there's always the fall back of granola, or grits and eggs for breakfast too.

With possibility of surgeries, injuries, blah days, and who knows what days ahead, it's nice to know that these meals are available when Mel or I need them. You never know what life is going to throw at you or when. Keeping a stocked panty pays dividend.